Select Committee on Science and Technology Minutes of Evidence

Examination of Witnesses (Questions 140-156)



  140. The Government's response to our Cancer Research report gave a commitment to "secure the future of cancer registration". Clearly you do not think much progress has been made?
  (Professor Sir Paul Nurse) No.
  (Professor McVie) We have not seen any. You are advised by an expert greater than the sums of the brains round this end of the table over there. I have no doubt you have heard a blow by blow account. It just is a major issue and could be devastating for cancer research.

  141. Just to finalise the issue then. The Patient Information Advisory Group was set up in May 2001 and it met for the first time only last month.
  (Professor Sir Paul Nurse) Yes.

  142. Regulation to protect cancer registration and cancer research has still not been made. From what you say you obviously believe this delay is adversely affecting your job?
  (Professor McVie) I do not think there is any doubt about that.

  Bob Spink: No doubt we will all be looking at that and trying to address it in the future.

Dr Turner

  143. This is a question for both Gordon and Paul. One of the strongest criticisms in our report was the fact that the Government only appeared to be putting in half the amount of funding into cancer research that your two bodies were doing between them. This elicited from the Government a promise, an undertaking, to match your contributions by the year 2003. When we questioned a previous witness, Sir John Pattison, about progress towards this commitment he told us that, in fact, Government was already matching on a one to one basis which I have to say we found a little surprising and we wondered about the accounting. We would like to know your response to that.
  (Professor Sir Paul Nurse) I think you should wonder about the accounting. What they have done is had a look at some of the other research activities, for example in the BBSRC, they have badged what could be said to be generic research into biology and biomedical work and re-badged that as cancer. Now, I know some case can be made for it but let us just get this on the table. In, for example, the basic research institutes of Cancer Research UK there is quite a lot of basic research which you could imagine going on in other institutes but it is going on with a clear objective of understanding cancer and it is not simply basic research, it is basic research which is always in the back of the mind which should connect with that general objective. It really is not the same thing as having a research project or programme funded in a university in an isolated place which might have in some other universe and some other time some sort of relevance. It is not the same thing. I think it has been massaged and if I were you I would look carefully at the accounting.
  (Professor McVie) It is the most creative accounting that I have come across for a very long time. We have even got the HEFCE money that was dissected to work out how many—

  144. It occurred to me that some of this money might be made up by notional costs involving clinical trials which represents money which should be being spent on patient care anyway irrespective of whether they were in a trial or not. Do you think that comes into the equation?
  (Professor McVie) You are absolutely right. The notion that the clinical trial is incongruent with clinical care is absurd, it is unethical. In many, many cases the best clinical practice is to put the patient on a clinical trial.

  145. Where the Government has allocated funding, state funding, for basic or clinical work, hypothecated funds, has it actually materialised?
  (Professor Sir Paul Nurse) We have had some. For example, the National Cancer Research Network, that is new money. The figures are not in front of me but I think it is probably over 20 million or around 20 million, so this is significant. We have to give them credit for that. There is some new money in the system but I just wish they had not gone through this exercise because we could have congratulated them more enthusiastically on what has been done, because it is good, if it was not submerged in this smokescreen. I think you should really push at this. They have not achieved the objectives you set them, which was to get them to match our expenditure, they simply have not done that.

  146. Do you have any specific suggestions as to what the Government should be doing?
  (Professor Sir Paul Nurse) I think they could look at even closer interactions with Cancer Research UK. As I said, we know the business, we are the experts, I think they could look at putting some extra money into us actually.
  (Professor McVie) Chairman, the obvious way to identify this money would be to have it passed through in a National Cancer Act directly to the National Cancer Research Institute and then spent by that conglomerate and then there would be no argument, that would be cancer research labelled money, end of story.


  147. Professor Miller, do you want to add anything?
  (Professor Miller) I totally agree because I do know a bit about the money that goes into universities. The Government puts money into cancer research but we are talking about the amount and not whether it does it or not.

  Chairman: This Committee will be reporting and I am quite sure that we have the message and you have our sympathies and our understanding of what you are saying here today, guarded as it might be. We feel much the same. It is not just in this area that we are bamboozled, it is in many other areas as well. No doubt Members of the Committee will pick that up when the report comes out. Thank you for saying bluntly what you have said.

Mr Hoban

  148. We touched earlier on translational research networks. Could you say where do you think the UK's attitudes towards translational research has improved since the Cancer Plan was published last year?
  (Professor McVie) Since the Cancer Plan was published?

  149. Yes.
  (Professor McVie) There is not a shred of evidence that it has.
  (Professor Sir Paul Nurse) Not due to the Cancer Plan, if that was the implication. Translational research is at the centre of what we do and what we intend to do, but that has not been influenced in any way by the Plan. We are driving through what the right strategy is for Cancer Research UK. I do not think it is influenced directly, but that may not be quite what you meant.

  150. What do you think should be done to change that approach? It sounds very much as if you are driving this process and nobody else has been terribly supportive of it. What do you think should happen to change that approach?
  (Professor Sir Paul Nurse) We need to explore this more fully in our strategy and so on, but my own personal view of this is that one of the greater weaknesses is the appropriate trained personnel to work at this interface because it is a difficult interface, it is very difficult research, but scientists who are trained to do that do not always fully appreciate the clinical drive and the difficulties there and clinicians often do not have the experience or the background to be able to easily take that on. This is why we are focusing so much on training, because we need to fill that hole. I think there is a funding issue but what we are looking at is a personnel issue here. We may need to recruit from overseas some senior positions here to help us drive this. We have, of course, some excellent translational scientists in the country and we are involving them directly in trying to develop these programmes. I would identify personnel as a major issue.

  151. Who do you see filling that gap in personnel? Is the training issue something that you would have ownership of or do you think it is something the Government should have ownership of?
  (Professor Sir Paul Nurse) We will do it. I suspect our commitment will be greater because we have seen it, we are focused, we know what the issues are, we are out there with the community and we will probably do it better. We will work, I am sure, in part through the National Cancer Research Institute, they will be aware of everything we are doing, and it may well be that we can look for some joint initiatives but, frankly, this is going to be a core issue for us in the new organisation.
  (Professor McVie) There can be no dispute about who funds the most cancer scientists in this country, it is Cancer Research UK by a long, long way. You can find these people and you can see who pays their salaries. Similarly in clinical training, in cancer medicine and in radiation medicine and so on, the main trainers are us. If you look at who are sitting in the Chairs of Oncology throughout the country and several places in Europe they would have been trained within one of our centres.

Bob Spink

  152. It just occurs to me that perhaps I should have mentioned earlier, I do not know if it is relevant, my son is a neurosurgeon often dealing with brain tumours. Perhaps I should have registered that as an interest. Looking at access for cancer patients to new anti-cancer drugs, this Committee has previously criticised NICE for not approving new cancer drugs early enough for use in the NHS and has also mentioned the difficulties faced in entering themselves for clinical trials. Has the situation with NICE improved at all? Are you concerned about the access of UK patients to new medicines that are developed here, sometimes with your funding by the way?
  (Professor McVie) We are not happy yet. NICE has got through some of the backlog but they are still not performing to our expectations or standards. There is a formal review of NICE going on, in fact there may be more than one review at the present. My office has certainly just submitted evidence from Campaign-funded oncologists to a review of NICE and from that review there were a couple of elements which were sticking out. One was they (NICE) are still taking a phenomenal time to do a review of a new drug and they are still not starting the review until some months, and sometimes years, after a drug has been passed by the regulatory authorities as safe, so there is a doubly-whammy here. That is causing real, serious frustration, particularly amongst informed cancer patients who can get the information about what is available for their kind of cancer. There is also a serious question of the competence of the so-called experts on NICE committees. There is not a known oncologist or anybody who is known to have been vaguely trained or familiar with the problems of oncology or cancer drugs or cancer techniques on the committees. Bringing in a couple of experts from time to time to give you a wee helping hand is not the kind of peer review process that we would find robust enough. I do not yet believe we are up there. The feeling out there amongst the people we canvassed for our review submission was very much that there was a cynicism and that NICE is still being used as a rationing tool by Government.

  Bob Spink: Certainly people with MS feel that is the case. The Government are now making moves on that one.

Dr Iddon

  153. Can I just intervene on that point. On the drug Temodal, whose development I have watched very closely because I used to be involved in imidazole research and I have followed Malcolm Stevens' history with interest, where have we got to with that drug because it has been around an awful long time?
  (Professor McVie) It has taken several years to go through the system, you are quite right, which is particularly anachronistic because this was UK invented, Cancer Research Campaign's, Malcolm Stevens' drug. The number of trials which NICE agreed to look at was severely rationed. They decided to discard a lot of the evidence whereas they accepted like evidence in other drugs. For some studies they accept abstracts, in others they want to take randomised papers. I think the present state of affairs is that Temodal is acceptable for prescription to patients with relapsed brain tumours after the failure of radiation and another kind of chemotherapy. Now Cancer Research UK is actually running a trial on earlier stage brain tumours, which is the obvious place to test this new drug, and we are looking, also, at supporting studies using Temodal with radiation because, like the drugs we were mentioning, there is quite a possibility of radio-sensitisation. Meantime, you really have to be down to your last four or five weeks of life to qualify for Temodal and of course that cuts the cost, in fact the cost becomes irrelevant.

Bob Spink

  154. Are the particular national guidelines for specific cancers updated often enough and are they flexible enough to be really effective?
  (Professor McVie) Guidelines are a fine thing but, as you are hinting I think, they need to be updated, they need to be critically assessed from time to time. There seem to be as many guidelines as there are regional health authorities. There are Scottish ones, there are Welsh ones, there are Irish ones. I think that national guidelines are important but they do have a tendency to describe the minimum care for a person with a particular kind of cancer and not the optimal care given access to all the resources. I think if we were allowed to write them from our perspective then we would be saying that Temodal might be made available for patients with brain cancer earlier. I think there is a real concern there. In some parts of the country not even the minimum guidelines are being followed, and that is part of the explanation of the point that Andrew Miller made earlier, that we are still not up alongside Holland, France, Italy in the outcomes for common cancers. Some of the simple things are still not getting done properly.

  155. So room for improvement there as well. Do you think that patient access to clinical trials has improved over the last two years and has there been any significant progress made towards developing a database of trials for patients' use as we have previously recommended?
  (Professor Sir Paul Nurse) I will deal with the former one because the answer is no, but the NCRN should improve that.
  (Professor McVie) No in England.
  (Professor Sir Paul Nurse) No in England, which is the major in numbers. The NCRN should lead, as I mentioned earlier, to a doubling in the coming five years, that is the objective. The second question I do not have a view on.
  (Professor McVie) The second question was?

  156. The second question was progress made towards developing a database of trials for patients?
  (Professor McVie) There are a couple of databases. Our website now has a database of 130 clinical trials available. You can get at that from next month through Cancer Research UK's website or Cancer Help, which is the property of the new charity. We have also got notes for patients, we have got help lines, we have got the information that is available in two languages, American and English, and we have been doing comparative studies among cancer patients to see which they prefer. That has been a terrifically welcome innovation. It is not totally comprehensive but the bulk of the blue chip trials in the UK, including pharmaceutical company trials which have been independently monitored, are now up on that database.

  Bob Spink: While I have got the floor, in thanking our witnesses for what they have said tonight could I say that I have enjoyed it very much and learned an awful lot from their evidence. I think you were particularly generous to say that we, this Committee, or the previous Committee anyway, had put cancer research on the map, and I thank you for that comment. That is our job.

  Chairman: I was going to say when I look back three years ago at where we were and look at the progress we have made and the questions that have been generated here today because of the discussions that you played a prominent part in, I feel very proud that the Committee was able to push it forward along with you. As you have pointed out, there is still a long way to go and I can assure you that this Committee will not let it go until we get all those things that we put in our original plan. Working with you has been a real big feature of this Committee over the last few years and is a good example of how Select Committees can move things forward as long as we get people who are enthusiastic, keen, knowledgeable and are prepared to engage in the political process. I know that you have met in other places with some of us in meetings and it is going to go on and on until we get the whole process of cancer treatment, care, research, to the world class that we know we can take it to right across the board. Thank you very, very much for taking the time to come. We wish you well and we will see you again. Thank you very much and well done with the merger.

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